Faces of Xq27-q28 DELETION
These are the beautiful faces of this rare deletion. Your donation goes toward research that will help support them.
Moriah
Moriah Joy was adopted by Amy and Tony Meacham in 2014, and she lives with her family in Gainesville, Florida. Realizing a few months into Moriah Joy’s life that she was having some developmental and health issues, the Meachams were faced with an ambiguous diagnosis of an unnamed gene deletion disorder, known as Xq27.3-q28 Deletion and Xtraordinary Joy was founded.
Despite her circumstance, Moriah’s smile and personality bring joy to everyone she meets! She hopes to spread this joy to others affected by rare genetic disorders, like those beautiful children below. She acts as the face of the organization to help raise funds for research into her specific X-chromosome deletion.
Aleah
Aleah is 9 years old. She loves art, and is so sweet and caring. She suffers from epilepsy, ID and ASD.
Despite her struggles she amazes us every single day. ❤️
Alexa
Alexa was born in Kansas but now lives in the Dallas, Texas area. She was diagnosed with her genetic deletion when she was over a year old. Alexa started walking when she was 2 and half years old but still has some physical disabilities because of her low muscle tone.
She is also diagnosed with intellectual disability and had three seizures in 2009 and 2010. Alexa is very social and friendly. She has limited verbal communication but keeps progressing with new words and phrases. Some of her favorites are books, playing with baby dolls, going to school and church, and being around her little sister.
Amelia
Amelia lives with her family in Arizona. She was diagnosed with her chromosome deletion when she was 18 months old and has since been diagnosed with autism, epilepsy and apraxia.
She uses an augmentative communication device as she is nonverbal. She enjoys books and art. She is especially sweet and affectionate. She loves music and Barney the dinosaur. She is loved by everyone she meets.
Aurora
Aurora (Australia) is so full of life and far too great for this world. Aurora has 3 holes in her heart, lung disease and bronchomalacia, grey matter heterotopia and pulmonary hypertension.
She’s been given a terminal illness because of her deletion and is fighting every day but shows up with great strength and courage. Aurora is one of a kind and will definitely leave a mark and impact on this earth.
Bridie
Bridie is a 4 year old Xq Cutie from Oklahoma. She has Physical, Occupational, and Speech Therapy twice a week and loves her girls that work with her!
Bridie has significant global delays, she is almost completely non verbal but has started making sounds more and tries everyday to get those words out. Bridie is a 7 farsighted and is in the 4th percentile for her height/weight so she is a tiny thing but her heart is so huge! She makes everyone around her smile! She loves kisses and tickles and singing songs!! Bridie is a gift our family didn’t know it needed and we are thankful everyday for her love!
Brees
Brees is from the Dallas Texas area. He was diagnosed around 5 weeks while in the NICU. Brees began to walk right around 4 years old. He is nonverbal but working very hard in therapy to speak. He is a very loving child who loves to give hugs to everyone he meets. His smile lights up the room.
He currently plays soccer with TOPsoccer special needs program and loves it. He enjoys spending time with his two sisters and brother.
Brett
Brett is 9 years old. We live in New Jersey and he has a fraternal twin brother who loves to advocate for him. Brett is non-verbal and uses a speech generating device to communicate as well as shows us what he wants. He understands language and follows instructions given to him if he wants to. He was diagnosed a couple of weeks after birth due to during his brain scan in utero, the Dr. noticed that he was missing a portion of his corpus collosum. After he was born he had an MRI followed by genetics doing a microarray blood test which then gave us several diagnoses including: Partial Agenesis of the Corpus Collosom, Fragile X, Sox 3, Xq27.1-28. He didn’t sit up until he was 18 months, walking around 3 ½ years old and he quickly learned how to run shortly after walking.
He started having silent seizures at almost 3 years of age and he has been on medication since he was 4 years of age when he was diagnosed with epilepsy. He started saying Yeah a lot over the past several weeks, we love to hear his voice even though its only one word. He gives the best smiles, laughs and hugs. He is very into technology and is able to navigate his ipad to broadcast his show he is watching on our tv on his own. He is a happy boy. He has started showing signs of jealousy with his brother which is a great sign he is more aware of things around him. We are blessed to be learning new things with him and meeting new people. He makes friends wherever he goes.
Giulia
Giulia is 3 years old and loves aquatic therapy and music class. Due to global developmental delay, she only has three words, knows a few signs, and just started walking this past summer.
Isabella
Isabella is 16 years old. She beat cancer at age 5 and continues to climb mountains even after being diagnosed with Autism level 3.
Isabella enjoys watching “Friends” and listening to music.
Ruby
Ruby was born in Ohio in 2018. During Ruby’s first year of life, her parents noticed she was not meeting milestones. At a year old, Ruby was referred to a Neurodevelopment team where genetic testing revealed a rare diagnosis of Xq27.3-q28 gene deletion. The medical team knew very little of this disorder and Ruby’s parents were told to ‘wait and see’ as Ruby was writing her own life story. Since then, Ruby has developed into a goofy, sweet, affectionate little girl. She started walking when she was three and hasn’t looked back. Ruby’s only speed is ‘so fast’.
She loves trucks, dirt, swimming, food, making messes, and above all, her kitties. She has the most infectious, nose flaring laugh. Despite difficulties with emotional regulation and sensory processing, as well as delays physically and cognitively, Ruby continues to learn and grow every day. She is Xtraordinary and makes her parents so very proud. Donate in honor of Ruby
Your generous donation helps support awareness and research for this rare deletion. Join us in our mission today!